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Canadian Thyroid Patients disgusted, frustrated and angry…and suffering.

Screen Shot 2015-10-20 at 1.47.36 PMO Canada! Our home and native land!
True patriot love in all thy sons command.
With glowing hearts we see thee rise,
The True North strong and free!

Canada is a proud country situated just north of the United States with over 35 million residents. And when it comes to the nation’s healthcare system, Canadians have stated they prefer their public healthcare system over the US with a strong majority, ranging from 82% to 91%.

But….in a Gallup poll more than a decade ago, there were different statistics when it came to the “quality” of that healthcare i.e. only 52% of Canadians felt “satisfied” with the quality of the care, and only 13% said “very satisfied”.

So how do informed Canadian Thyroid Patients feel about their healthcare system and/or quality of care?

Understand that all Canadians, whether thyroid patients or not, obtain their healthcare via a publicly-funded system, which means most of the care is “free” when they get it! They obtain most services from private facilities or practitioners. In 1984 and under Pierre Trudeau, the government created federal quality standards of care, called the Canada Health Act. Granted, prescription drugs are not covered for most, nor is dental work or glasses. And there is limited coverage for one’s mental health issues or fertility issues. But on the positive side, all basic care is covered and free (including maternity care) and patients can choose their own practitioners.

So to find out how informed Canadian Thyroid Patients feel about their system and/or their care, I did an informal poll in the former Facebook FTPO Canada group with four questions, below, and some of the answers. Note that by “informed”, I’m referring to patients who learned the hard way that treating their hypothyroidism with one thyroid hormone (T4) was not the way to go, that there are far better tests than the TSH lab test, that there are clear thyroid symptoms that are ignored, and that they, as patients in Canada, care about far better ways of doing it all!

1) For your thyroid treatment only…do you feel that you’ve gotten excellent care? Why or why not?

  • No. The Endocrinologist I saw was horrible…didn’t tell me anything about my disease (Graves) just presented me with “the only” treatment (RAI)…to be followed by the wonder drug, Synthroid (also told me there were no other options).
  • I wish doctors were educated on Natural Desiccated Thyroid (NDT). The dr’s i have talked to about it have no idea what it is and when they look it up on their tablets, they say stupid things about it. One said its for pigs not humans; another said you could get MAD COW DISEASE!! Another one said he knew of one person on it that died of a heart attack!! Wow they need to be in the know. Education is the KEY. I wrote to ERFA and asked them about visiting these dr’s for an information session which I know the Synthroid reps do. They answered that they have a team but only a few dr’s in Toronto have been visited!! I’m seeing an open minded internist but she has no idea what to do with me, so I see a naturopath for help. Its frustrating that dr’s won’t order the blood work for the ND’s to help diagnose as that way it would be covered by OHIP, when the ND orders I have to pay. Annoying to say the least.
  • We are sick and helpless and they are keeping us sick by not helping us………..
  • No, they look at paperwork and if the numbers are within the range the doctor says they should be in you are fine. They never ask how you are feeling.
  • Terrible care. For 8 years, no doctor would pay attention to symptoms because my TSH was “normal”, even though I was at the high end of the Canadian range, which in my area was still higher than what the US now uses. They told me I needed antidepressants, not thyroid treatment. When I did finally get a couple of results higher than normal TSH, they ignored them, and I wouldn’t even know about those results if we didn’t have access to our online test results in BC.
  • No and also yes. No – not from Endocrinologists or GPs. Yes – from a Naturopath (ND). Endos didn’t run all the right labs, or ignored the labs and my symptoms. Naturopath treated me like a whole person.
  • No. Too much reliance on the TSH. Have clearly been hypothyroid since the mid-80s, but didn’t get treatment at all until 2011. Even then, my TSH was “normal”, but I was desperate and had a dr. willing to at least try me on a low dose since my TSH was near borderline.
  • No. Completely untreated, despite TSH of over 16 because he gets hyper symptoms with the lowest dose of every med (including NDT) and doctors either refuse to believe him or don’t know/can’t be bothered to work to fix it.
  • No. The answer was always another pill rather then believing me when I said I felt it was my thyroid was causing issues. It’s better now that I have a good ND…but he is still limited and get tired of going back and forth between docs to get answers.
  • They care about their numbers. Depression, weight, aches, pains, fatigue, hair loss….no one fought for me and my health. I was treated for symptoms of all the above but almost felt like (with what they implied) it was my fault….lack of exercise, not perfect diet, single mom (at the time so depression was put on that) it’s criminal really what they let things get to!!!
  • No, too many think it all revolves around the TSH
  • No, I didn’t get excellent care – even though I have a goiter on the left side and several nodules, one over 10 centimeters, and a biopsy to check for cancer, I still am not getting treated because my TSH is normal.
  • No, GPs are terrible and I only found a couple that would prescribe NDT, but have no idea how to treat, so useless! Same as the above, only Naturopaths and a few functional Doctors!
  • I have found most Docs I’ve seen…..and there have been a lot…..are completely ignorant about thyroid disease. They rely on TSH and Synthroid and know nothing about conversion issues, iron issues related to thyroid, adrenal issues or much else. They also know nothing about NDT or how to dose and what labs they should be doing. My two Naturopathic docs that I have used (because I could not rely on a regular MD or even a so called “Specialist” who was an Endocrinologist) are very aware of these issues thankfully. It took me many years to realize it was actually my Doctor’s lack of knowledge that was keeping me ill.
  • [And some simple “no’s”.]

2) Do you feel Canadian doctors “as a whole” are informed about proper thyroid treatment, or not?

  • No. My GP was concerned about all my symptoms but had no clue they were thyroid related. Oh, and if the UBC locums I’ve seen are any indication of the future, it’s not getting better.
  • No, I asked about NDT and she did not even know what I was talking about, nor did she know about Cytomel.
  • Not. Also, it’s a very big struggle to get anything except TSH tested.
  • I can’t really say “no” as I don’t think the issue is actually education. The bigger issue is that there is essentially only one insurance provider for each province – and since that provider is the gov’t the doctors are restricted in how they can treat. So even those educated or who want to go outside the guidelines aren’t able to do so (not like in the US where they can just be outside of all networks).
  • No. Just like drs in every other country, they’re all riding the utterly useless TSH and Synthroid train.
  • Hell no…..otherwise we wouldn’t be requesting ndt or endo referrals, blood labs and such. They made me to think it was in my head.
  • Not informed at all.
  • No, they are quite limited in their knowledge, it seems. 3 I haven’t found a good doctor yet – I’m in BC 5. I would like to see doctors be freed up to treat their patients based on their symptoms and not TSH.
  • [And some simply “no’s”]

3) What kind of doctor (specialty) in Canada do you feel gives you the best care as a thyroid patient..even if it’s not perfect, but better than others?

  • GP. I have seen him for over 20 years and he was at least willing to try something different and order the needed tests. He looked at the research I brought him and has even high-fived me about the progress I’ve made.
  • I finally found a naturopath that actually attempts to solve my issues. And he respected my wishes in terms of using natural thyroid.
  • Naturopath – unfortunately they can only prescribe thyroid meds in BC, and in Ontario once they can all get through the exam. See #2 – they can actually be outside the usual network.
  • Private integrative MD $$$ paid by cash out of pocket
  • GP
  • Maybe an ND? (still looking)
  • ND has more knowledge then ENDO/GP
  • Haven’t tried others (others said this)

4) For those who have experienced BOTH Canadian and US healthcare as a thyroid patient only: what did you notice about either?

  • Haven’t personally experienced but know many, many thyroid patients who do – and freedom of choice seems to be the thing Americans have that Canadians don’t. Also a LOT easier to order your own thyroid meds in the US.
  • [None of the other respondents have experienced both systems. Maybe you have who are reading this and can comment??]

5) What would you like to see changed in the Canadian healthcare system as a thyroid patient?

  • Better training. Make it less hard to get NDT…in fact, present that to patients as an option. Make all the tests available to everyone without fees so that we can correctly manage our disease. An understanding that as healthy well treated patients, we have much more to contribute to society as a whole…maybe if the ‘powers that be’ understood that, we could get better treatment.
  • I question the fact that we Canadians only have ERFA thyroid as an option as to the U.S. Having a few NDT manufacturers to chose from. In terms of our healthcare, yes we have free healthcare but since learning about NDT, I’ve had to put out hundreds because it seems the only ones willing to listen to our plight is functional or ND’s. I would love it if MD’s and endos alike stop looking at us like we have 3 heads and listen to out symptoms and relate them to thyroid.
  • There are epidemic number of people with this disease. They need to have specific clinics, so care is more regulated and specific
  • Better understanding of hypothyroidism and its treatment.
  • Discarding of TSH as “the test” for hypothyroidism.
  • Better understanding of Hashimotos, and readily available testing for it.
  • Doctors trained to give a full thyroid panel where the patient’s symptoms are ongoing and they cannot identify the cause.
  • Doctors trained to UNDERSTAND the full thyroid panel, hormone ratios, interactions with iron and ferritin.
  • Doctors educated about how some patients don’t correctly convert T4 to T3 in sufficient amounts. Removal of the vilification of NDT – let the patient choose, and try an alternative if the first choice doesn’t work.
  • Everything. I did not receive any help with my thyroid except given Eltroxin, a T4-only med. The doctors do not know anything about the thyroid and trust the lab’s TSH only. I have not seen or been offered to see any Endo and this has left me in years of depression, bone deep fatigue for years -approximately 20 years. There is no one to turn to and have to travel if I find one.
  • No more reliance on TSH, especially when initially determining if someone needs treatment and when they are being treated by any T3 containing meds including NDT.
  • None of them seem to get that a suppressed TSH is normal when treating with T3. Understanding that a lot of people with hypo even if they are deficient in T4 also can’t convert it to T3 and Synthroid treatment won’t help.
  • Most don’t even seem to understand T4 is useless until it is converted. For most people NDT or T3 only meds should be the first line treatment!
  • Even veterinarians don’t rely on the TSH test! Noticed some doctors of psychology seem to recognize TSH is an unreliable test, so not sure why MDs in Canada are relying on it. Treat according to symptoms with alternate testing to support care that is proven and helping over 300,000 thyroid patients better than current. Note that drugs in Canada not being tested for ingredients or standards say CBC. Cost of testing and treatment needs to be subsidised for Canadians.
  • Free T3, Free T4 and antibody testing as standard for diagnosing and treating with RT3 testing easily available. And it would be really nice if doctors actually *understood* how to use these tests.
  • More understanding, testing and treatment of adrenal issues which are related to thyroid issues. I suspect my husband’s hyper with treatment reaction is due to adrenal issues, but the dr. refuses to test.
  • That ND’s were brought in more for my health care. That Endos/GP’s would actually do some research and learn more about the importance of T3. That Health Canada wouldn’t tie GP’s to sticking with guidelines for treating EVERY patient the same since we are all different. That doctors would get educated that diet plays a huge role in thyroid health. That doctors would understand that my issue is an Autoimmune disease and there are steps to calm the immune system down.
  • More teaching of symptoms and finding out what works so we can get back to being functioning people again.
  • Options. And to be taken seriously. They obviously care about personal client health…..act like it.

And the summary we can conclude from Canadian Thyroid Patients?

Granted, this was a small and informal poll. But it does give the strong impression that

  1. Informed Canadian thyroid patients are disgusted, frustrated and angry…and suffering.
  2. No matter how great one’s national healthcare system may seem to be, “free” doesn’t equal “quality”, nor do “strong outlined governmental principals” equal “wise treatment protocols”…as we’ve seen with thyroid issues and thyroid patient care.
  3. Canadian healthcare practitioners, just like any other country, need a far wiser understanding of the following:
  • the use of Natural Desiccated Thyroid or T3
  • why using just the TSH is inadequate
  • which lab tests really are most important, like the Free T3 and Free T4
  • how lab results have nothing to do with simply “falling in the normal range”
  • how symptoms are extremely important
  • that it’s not just “all in the patient’s head”
  • to take the patient experience more seriously
  • why Synthroid has been quite inadequate for most…sooner…or later.
  • understanding how common adrenal issues (adrenal fatigue) can be, and how to properly treat it

It’s all right here, Canadian doctors, if you are willing to listen to the wisdom and reflection of patients: //www.stopthethyroidmadness.com/things-we-have-learned And perhaps the new Prime Minister, Justin Trudeau, will have listening ears?

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  • Canada’s own version of Natural Desiccated Thyroid is made by Erfa. But unfortunately, patients have reported that some batches have resulted in a return of symptoms. This blog post was active for quite awhile about that problem with certain batches of Erfa!!
  • Come on over to Like the STTM Facebook page to get daily inspiration and information from the FLAGSHIP of worldwide patient experiences and wisdom from which all other websites and groups borrow. lol.

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10 Gray Areas about Thyroid Treatment and related issues: The Anomalies

Screen Shot 2015-09-01 at 2.34.02 PMEver heard of the word “anomaly“? It means that which deviates from what is standard, normal, or expected. You could also call it the “gray areas”.

And when you’ve observed and compiled thyroid patient experiences and wisdom as long as I have, one thing certainly stands out: though something may be true for the majority of thyroid patients, it may not be true for others.

Here are 10 of those anomalies when it comes to thyroid treatment and issues related – – all based on repeated observations: 

 

  1. HASHIMOTOS and GLUTEN:

    Though the majority of Hashimoto’s patients seem to need to be off gluten to control their antibodies and improve nutrient absorption, there have always been a small percentage of those who have never had problems with consuming gluten….ever.

    i.e. though their once-high antibodies revealed their Hashimotos state, eating gluten didn’t make them worse, nor did gluten consumption bring their antibodies back up after they had gotten them down due to a better thyroid treatment or use of iodine. (Yes, iodine use has helped many Hashi’s patients bring their antibodies down).

  2. SYNTHROID OR OTHER T4-ONLY MEDS:

    Though we’ve observed that the biggest body of Synthroid or T4-only users see the failure of their treatment either from the beginning or within the first few years (in their own degree and kind), there is a small percentage who may not see the failure for 15, 20 years or more, and an even smaller body who feel they never have problems from it (though they usually do and don’t recognize them as problems related to being forced to live for conversion alone).  

    Informed thyroid patients have observed that in fact, some T4-users convert to T3 (the active hormone), better than others…for awhile.  Other T4 users may never have needed treatment at all. My sister-in-law is an example. Her doctor once found her TSH was high, so he put her on Synthroid. She seemed to do fabulously for about 4 years. Then she stopped and was fine. Looking back, there’s a good possibility that chronic stress was pushing her cortisol high, which promotes a hypothyroid state and higher TSH…thus the appearance of thyroid disease. When the chronic stress is resolved, the “hypothyroid state” goes away.

  3. ADRENAL ISSUES:

    Though we’ve observed that at least 50% or more of thyroid patients end up with an adrenal problem due to being on the inadequate T4-only or other stressors to their adrenals, there is another body of patients who never seem to acquire adrenal problems yet had every stressful reason to. 

    Who knows why some escape it. My mother was on Synthroid her entire adult life and paid horrible prices, yet I saw no evidence of an adrenal problem. I was the same–had a million reasons to see my adrenals become sluggish, yet it didn’t happen. Something about our biological or genetic makeup in response to stress? Our way of handling stress? Supplements we took?

  4. HOW MUCH NDT CAN BE TOLERATED WITH LOW CORTISOL

    Though a large body of low cortisol patients can only tolerate “up to” 1 1/2 grains of NDT without having problems, if they go higher, they start to see either pooling of T3 or rising RT3. A smaller percentage can go much higher without noticeable issues, and another small percentage can’t even go as high as one grain without seeing those issues. But they are there.

    When one’s cortisol is a problem, especially when it’s too low, NDT at certain raises will reveal the low cortisol. i.e. NDT is not the problem; it’s revealing the problem via the raises. //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

  5. WEIGHT GAIN:

    Though it appears the majority of thyroid patients will either gain easy and/or have trouble losing weight, there is a smaller minority with hypothyroidism who stay thin.

    There are so many possibilities as to why some hypothyroid patients stay thin, ranging from not being one who uses food to treat emotions…to all the genetic differences in how each of us burns fat or what one craves. http://www.theguardian.com/world/2012/jul/17/food-metabolism-calories-obesity-diet

  6. WOMEN VS MEN AND HYPOTHYROIDISM

    Though the majority of hypothyroid sufferers appear to be women, there are a body of men who will find themselves in a hypothyroid and/or adrenal state, as well. 

    There is speculation that because of women’s hormonal changes, it makes them more susceptible to having a thyroid problem. But men get thyroid problems, too, so the problems of toxins in our environment and/or low iodine may be other issues affecting both males and females, even if females with their hormonal issues get it more often.

  7. OPTIMAL AMOUNTS OF NATURAL DESICCATED THYROID (NDT)

    Though it appears that a large body of thyroid patients, when optimal, end up in the upper two grain area AND HIGHER…there is a much smaller body who are even higher than the 3-5 grain area, and the very minority are optimal less than 2 grains. 

    If a line is drawn with the least amount of NDT on the left, and the highest amount of NDT on the right, and with a dot representing each person on an optimal amount of NDT, the majority of dots start to fall in the upper 2 grain area and into the 3 grain area. A lesser amount of dots fall in the 4-5 grains area, and fewer dots are higher. Same with the other direction, Much lesser dots are in the lower 2 grains area, and even less in the 1-2 grain area. Of course, this observation is only true when participants understand what “optimal” really means (which many do not) and is explained on the Natural Thyroid 101 page.

  8. DOCTORS

    Though patients have reported over the years that the majority of their doctors are overtly clueless about either diagnosing or correctly treating their thyroid disease, there are a small and growing percentage of medical professionals who are bucking the trend and taking the time to listen to informed patients and Stop the Thyroid Madness, both website and books. 

    And honestly, we all play a role in strengthening that trend by politely yet confidently being your own best advocate, learning what patients have learned, and having the courage to explain it to your doctor, besides make it clear that “this” is how you want to do “that”. If a doctor will not listen, we put our money into the hands of those who will. A doctor works for YOU, not you for him or her. Here’s how to find a good doc.

  9. PROGESTERONE

    Though many (not all) females see their sex hormones mess up in conjunction with having hypothyroidism…and thus, can need progesterone supplementation to counter estrogen, there is a risk of having the progesterone convert to too much cortisol and causing miserable symptoms of high cortisol!

    In the hormonal pathway of conversions, there are some who convert progesterone to cortisol far easier than others. So each person has to figure out how much progesterone they can handle, which is probably individual. If cortisol is low, though, progesterone converting to cortisol can be a slight boon! 🙂

  10. ACID REFLUX/GERD

    Though it’s very common for doctors to prescribe acid reducers like Prilosec or over-the-counter antacids like Tums for your GERD or Acid Reflux….in reality for thyroid patients, turns out they have LOW stomach acid causing the reflux, not high. 

    Though antacids will seem to relieve the symptoms, it’s actually making the low stomach acid now worse, which in turn makes your ability to absorb nurtrients worse. Read about this issue right here: //www.stopthethyroidmadness.com/stomach-acid

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How foods you eat, or don’t eat, can make or break your health!

Headshot StandingWhen you think of doing things that will make you healthy, what do you think of?

But there’s one more way to achieve health: what we eat or don’t eat!  The right food is bigger than we ever imagined for our health and well-being as thyroid patients, especially if you have autoimmune issues. And that is an especially important when the shelves of our grocery stores are filled with rows and rows of over-processed junk!!

The following STTM Guest Blog Post…about FOOD…was written by Jennifer Robins. She was diagnosed with several autoimmune conditions like Hashimoto’s disease, had chronic infections, plus Lyme disease. Jennifer became gravely ill and mostly housebound. When traditional medical treatments failed to help, Jennifer turned to food for healing! Yes, food. She removed grain, dairy and refined sugars and began eating “predominantly Paleo”. And because of that radical change in the way she ate, she started reclaiming her life, one whole food at a time. Read about her interesting story!

I remember growing up eating a standard American diet, missing little to no school, and having more energy than any one person ever could use. While my family did not eat out or frequent drive-through windows routinely, our home had it’s share of boxed “food”. As a family, we were “healthy.” We felt good and rarely visited the doctor.

It’s funny looking back, how people defined “healthy”. Rarely did we think about what goes into our bodies as defining health. Instead, we tended to gauge our health by how we think we feel, how many prescription drugs we are taking, and whether or not we have made any trips to the emergency room.

However, with autoimmune disease and other chronic ailments growing exponentially every year, diet and food sourcing is becoming increasingly more important.

Eight years ago after giving birth to two babies less than a year apart, I felt miserable.

I chalked it up to the obvious lack of sleep, the stress of having two babies so close together, and to the fact that my husband was preparing to deploy, leaving me behind with our infant and toddler.

Exhausted, frazzled, irritable, lightheaded, and overheated, I finally headed to my general practitioner to seek advice. She ran thyroid labs and they were “normal”, except for my TSH which read 0. Yes, 0. We agreed to follow up several weeks later and when I did, my labs were all in range, including TSH, FT4, FT3, and reverse T3. My low TSH had resolved yet I felt just as horrible if not worse than the month prior.

Eventually I sought out the help of an endocrinologist who discovered my thyroid antibodies.

My Anti-Thyroglobulin levels were more than double the upper limit. All other thyroid labs were in range, as they fluctuated between hyper and hypothyroid. I was diagnosed with Hashimoto’s and sent on my way. I tossed my prescription for synthetic thyroid replacement, as I just wasn’t ready for that step, whatever that meant.

I ended up reading about the connection between gluten and autoimmune disease as I scoured the internet looking for answers to my affliction. I was desperate to avoid taking thyroid replacement for the rest of my life. I ran the stool test looking for antibodies produced against gluten and came back positive. So I gave up gluten and was very compliant; but within the year resolved to start thyroid medication.

I researched natural desiccated thyroid and knew it was the best fit for me, so I found a doctor willing to prescribe it. Over the next year or so things leveled out, symptoms improved, and I felt like I could at least participate in my life. We moved to another military assignment, I began working out more regularly, started routine acupuncture, and realized I wanted another baby.

After a few months of trying, I got pregnant.

I was elated and I was feeling better than I had in a long time. My pregnancy was fairly uneventful other than managing my thyroid dosage, and my delivery was unmedicated–a goal I had had for awhile. I had 3 healthy children and life was good.

But around 5 months postpartum, I began feeling terrible. 

It was even more terrible than I felt after the first two babies were born. I chalked it up to juggling 3 babies and the hormone shift as well as the need to recalculate my thyroid dosage. I had let my strict gluten free lifestyle go as well and it was time to refocus. So I lowered my meds, cleaned up my diet, and tried to ride it out.

And I got worse. Much worse.

I became so sick in fact that I was housebound 90% of the time and often bedbound. Now I was stricken with neurological symptoms including brain swelling, vertigo, migraines, severe emotional lability (especially when my brain was inflamed), heart palpitations, disorientation, word searching, and more. It was a living nightmare.

I visited a new integrative doctor, in yet another new city and sought help.

She ran labs for viruses, candida, thyroid, adrenals, nutritional deficiencies, and infections and included urine, stool, blood, and hair. The results were overwhelming. I had elevated antibodies for so many types of infections I didn’t know where to start. She noticed I had a few antibody bands come back positive on a western blot for Lyme disease and suggested I test further. I fell down a rabbit hole of more testing, more doctors, and lots of medication recommendations.

Ultimately, I chose to treat the Lyme disease as it was insinuated that this could be the root of all my issues. I began multiple high dose antibiotics that I eventually took for over a year. I was back to strict gluten free eating, took over 40 supplements, probiotics, herbs, and anything else that my doctors recommended. I saw 3 different Lyme literate physicians (LLMDs) over this time.

And I got even worse. Ridiculously worse.

I was assured that this was “herxing” or bacterial die off. So I persisted, I stayed on meds, and life just kept getting more horrendous. I so often begged to die that I wondered daily when my last day on earth would be. I knew I was dying, I just didn’t know when or how long it would take.

But during this time I researched. I read and read and dug until there was nothing left to read. I kept seeing things about the paleo lifestyle for any number of ailments. Be it autoimmune or otherwise, it seemed I was being pointed in this direction for a reason.

Ultimately I made the decision to stop taking antibiotics and start focusing on rebuilding my immune system instead of destroying it.

Giving up the remaining grains and dairy was terribly hard, but it was the first time I began seeing ANY progress in this very long journey. Slowly but surely, I began reclaiming bits of my life back. I began chronicling my recipes, keeping a blog in secret, and eventually sharing it with others. I simultaneously took my already-gluten-free children off of dairy as well, so I needed a place to revisit recipes that kept them nourished and happy too. I noticed changes in all of us. My five year old’s sleep apnea and enlarged tonsils all resolved, my two year old’s enlarged glands in both her groin and neck resolved, and my son’s tummy aches disappeared without gluten and dairy.

I see now how life altering food changes can be.

I see that what you put in your body has everything to do with not only how you feel from day to day but also has the capability of healing a leaky gut and truly managing autoimmune conditions. This does not mean that food always takes the place of medication or of medical care. But we cannot overlook nutrition as being instrumental in our healing.

In my own story, my body could not even begin to heal until I removed inflammation-causing foods, despite the multiple medications, supplements, and other lifestyle changes. My healing has been gradual, with those expected setbacks that have made me feel as if I was failing. But over the past 2+ years of eating this way, I have finally seen glimpses of the old me. Before my body began attacking itself, before I became a shell of the person I was, and before my immune system became my own worst enemy.

I consider myself a work in progress as I truly believe that once you have a chronic ailment, you must always take extra care in respecting your body and its limitations. But I am living again. I am an active parent, a contributing citizen and am no longer just a spectator of my own life. And for that my heart will never be able to exScreen Shot 2015-08-16 at 2.56.40 PMpress the joy and gratitude to have been born once again.

ABOUT JENNIFER ROBINS: Jennifer is the voice and whole foodist behind the popular food blog Predominantly Paleo and is best selling author of the fabulous book of recipes and information called Down South Paleo: Delectable Southern Recipes Adapted for Gluten-free, Paleo Eaters
–filled with gorgeous photos of the recipes she includes. You can also visit her Facebook page Predominantly Paleo which has some really delicious recipes on it, too.

P.S. I, Janie, have her book Down South Paleo: Delectable Southern Recipes Adapted for Gluten-free, Paleo Eaters and it is fabulous.

**************************

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15 Things which Thyroid Patients should teach their Doctors

Screen Shot 2015-08-07 at 4.28.31 PMMany thyroid patients will tell you they have, or have had, doctors they love! I, Janie, have had many of them.

But it doesn’t take away from the fact that those in a medical profession have been sorely lacking for decades about correct knowledge on how to diagnose and treat hypothyroidism or Hashimotos, besides have inappropriate familiarity about all the issues related to being hypothyroid. Even their knowledge on how to correctly read labwork has been lazy.

Because of that poverty of correct knowledge, patients were forced to take the bull by the horns and figure things out for themselves! Stop the Thyroid Madness, the flagship of “patient experiences and wisdom”, represents all that wisdom!

Here are 15 things that any thyroid patient not only has to learn, but needs to teach any medical practitioner the best way they know how:

1) My fatigue and weight gain is not simply because I need to exercise more and eat less.

Granted, we know that exercise and how we eat is important! But being undiagnosed hypothyroid, or poorly treated due to Synthroid or any other T4-only medication, or being held to the TSH, keeps many of us with a low metabolism. The latter results in very easy weight gain, or the failure to do the kind of exercise which would help us!

2) Depression is strongly related to continued hypothyroidism!

We know there can be a variety of reasons for depression, but for most thyroid patients, our depression is a sure sign that we are either undiagnosed due to the lousy TSH lab test, or undertreated due to being on only one of five thyroid hormones like T4-only, or being held hostage to the TSH, a pituitary hormone.

3) The TSH lab test has been a failure for too many years.  

Yes, though a seriously low TSH can detect if we have hypopituitary, for most of us, we’ve had a “normal” TSH yet obvious hypothyroid symptoms. Additionally, when we are optimally treated on Natural Desiccated Thyroid, T4/T3 or T3-only, our TSH lab test is always below range without one hint of bone loss or heart problems. We want to go by the free T3 and free T4, plus symptom removal and a good heartrate and blood pressure instead. //www.stopthethyroidmadness.com/tsh-why-its-useless

4) To figure out if I have Hashimotos,  BOTH antibodies labs need to be tested, not just one. 

To detect if we have the autoimmune version of thyroid problems, patients saw right away that one antibody could be high, but the other one not.  So we need both the anti-peroxidase AND the anti-thyroglobulin lab tests. And by the way, many Hashi’s patients soar on Natural Desiccated Thyroid if they raise it correctly. See #5.

5) Natural Desiccated Thyroid (NDT) has been changing patient lives for years now, just as it did for decades before Synthroid hit the market. 

Though some patients do better on T4-only meds than others…at first..there is simply too many reported experiences by patients for 15+ years that it’s not the way to go. And those same reports show that being on the five hormones that NDT gives makes much more sense.  Even adding synthetic T3 to synthetic T4 has produced better results.

6) I can’t wait six weeks before having a raise!

Thyroid patients found out the hard way that if they stay on a starting dose of NDT (which is usually one grain) longer than a few weeks, the feedback loop causes hypothyroidism to come back with a vengeance in some way or another. So we raise every two weeks and start slowing those raises in the two grain area or close to three to start finding our optimal dose. //www.stopthethyroidmadness.com/natural-thyroid-101

7) My lab results are not about being in the “normal” range.

This was a huge discovery by informed thyroid patients as they kept observing each others lab results for years: it’s about “where” the lab result falls that tells the story…not just because it falls in a suspicious “normal” range based on the testing participants the lab facility chose. //www.stopthethyroidmadness.com/lab-values

8) If I react poorly to NDT, it’s not because NDT isn’t right for me. 

Patients who have had problems with NDT found out that there are five correctible reasons for most of them:  a) being kept on lower doses far too long b) not raising high enough because of being held to the TSH range c) having low iron d) having a cortisol problem 5) having Lyme. This page explains: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

9) Yes, there really is such a thing as adrenal fatigue/adrenal insufficiency/hypocortisolism.

Easily more than 50% of thyroid patients end up with a cortisol problem, either due to being undiagnosed for years thanks to the use of the faulty TSH lab test, or being put on only one of five thyroid hormones–T4. And to learn more about it, one of your doctor’s own colleagues has written a brilliant chapter as to biologically why we get low cortisol, found in the Stop the Thyroid Madness II book, chapter 15. And this:  //www.stopthethyroidmadness.com/adrenal-info

10) Saliva testing for cortisol is far more accurate than blood testing

Saliva is said to be testing one’s cellular levels of cortisol, plus it does so at four key times during a 24-hour period, which is important to know. And patients found that the results (from reputable companies) fit their symptoms! Whereas blood cortisol testing is measuring both bound and unbound cortisol, and most of the time does NOT fit the symptoms, showing high cortisol when we are really low, or vice versa. //www.stopthethyroidmadness.com/adrenal-info

11) If some or most of my saliva cortisol results are low, there are safe and effective ways to treat it. 

The adrenal area is one which thyroid patients took great time and care to learn, based on what we read from experts, plus our repeated experiences and wisdom. This is where our doctor, need to be open-minded enough to learn from Stop the Thyroid Madness, both on the website and in the revised STTM book, chapters 5 and 6.

12) If I have acid reflux or stomach problems, it’s usually due to low stomach acid caused by our hypothyroid state, not the need for Prilosec (Omeprazole). And some of us need to be off gluten, especially if we have Hashimotos.

i.e. what we need is to restore a better level of acid in our stomachs, which our hypothyroid state lowers–the latter which causes problems in absorbing vitamins and minerals. That’s why we need to put lemon juice or apple cider vinegar in the liquids we use to swallow our meds and supplements. And a large body of us with Hashimotos need to be off gluten.

13) I’m not stupid just because I didn’t go to medical school, plus I live in my own body. So I need you to see us as a team. 

Because of what Stop the Thyroid Madness gives me, both the website and the books, it’s important to me that you see us as a team–BOTH my knowledge and your own.

14) No, thyroid cancer is not the easy cancer.

Thyroid cancer patients hate their cancer as much as anyone does…plus it’s worrisome, surgery nor RAI is not a picnic, and recurrence is on our minds. //www.stopthethyroidmadness.com/2015/01/31/thyroid-cancer-easy-cancer-thyroid-cancer-patients-appalled/

15) My thyroid labwork should be done before I take my thyroid meds for the day. 

Patients discovered that the T3 is NDT will peak about two hours after meds are taken, then a slow fall. If patients are on T3-only, it’s a 4-hour peak. We want to measure what still lingers in us, not the peak or rise.

What else do you think our doctors need to learn?

JanieSignature SEIZE THE WISDOM

* Join the STTM Facebook page for daily information, tips and inspiration!
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Medical Boards and the TSH: how they fail thyroid patients worldwide!

STTM Texas Medical Board“A learned fool is more a fool than an ignorant fool.”
                        ― Molière

 

In 2008, a news press appeared about the discipline of a very popular and well-liked doctor in Texas, USA who treated many hypothyroid patients.

And for what?

Under the column titled NONTHERAPEUTIC PRESCRIBING, it stated:  The action was based on Dr.________ prescribing Adipex, Adderal and Armour Thyroid to patients when such medications were not indicated.

Adipex and Adderal are both central nervous system stimulants, and we can’t comment one way or the other.

But the mention of Armour thyroid as “not indicated” was a sure sign that this medical board was using the ridiculous TSH lab test range to decide whether a thyroid medication was needed or not. We’ve already seen numerous and similar disciplinary actions brought upon well-liked and wise doctors like Dr. Peatfield and Dr. Skinner of the UK, Dr. Derry of Canada, and Dr. Springer in the US–all who dared to make obvious symptoms of one’s hypothyroid state more important than ink spots on a piece of paper. There have been many others.

Just to clarify: TSH stands for Thyroid Stimulating Hormone and is a messenger hormone released by your pituitary gland with the purpose of “knocking” on the door of your thyroid to tell it to produce thyroid hormones. So the implication is that if the TSH lab result falls in this so-called “normal range” (which in itself is a travesty), by golly everything must just be fine with your thyroid. You will read an interesting and explanatory chapter on the TSH in the revised STTM book as well as more information by Dr. Jeffrey Dach in the STTM II book.

But thyroid patients all over the world know first hand that the TSH lab result has been a complete failure. It can look “normal” even while we have clear symptoms of hypothyroidism. And it can take years and years before it rises high enough to show that something is quite wrong with the function of our thyroid.

A side note: the Association of American Physicians and Surgeons (AAPS) filed a lawsuit against the entire Texas Medical Board (TMB) and its officials in 2014. Though unrelated to thyroid treatment, they cited Manipulation of anonymous complaints, conflicts of interest, violation of due process, breach of privacy, and retaliation against those who speak out.

Kymm is a good example of the TSH fallacy in diagnosis

Take Kymm, a 45 year old woman. She had manifested hypothyroid symptoms for 15 years since the birth of her daughter. Yet during those entire 15 years, her TSH lab result had been completely “normal” in the upper 1’s and lower 2’s. Her hypothyroid state had never been “indicated” based on the typical and widespread gold standard of diagnosis used by medical professionals: the TSH.  As a result, she simply continued to suffer with easy weight gain, chronic depression, thinning hair, rising cholesterol, dry skin and an increase in stress on her adrenals. (And she did finally start on Natural Desiccated thyroid aka NDT, with adrenal treatment…and soared).

Kymm is not an oddity.  Thyroid patients on internet groups report going years with a normal TSH and no diagnosis, yet clear symptoms which are ignored by their TSH-obsessed doctors.  So their doctors may have avoided disciplinary action by going strictly by the TSH lab test, but did they truly practice the art and science of healing??

A doctor is disciplined for allowing a patient’s TSH to be suppressed

A horrendous disciplinary action happened to a California physician when it came to the thyroid treatment of one of his patients named as V.G who had had her thyroid removed. She had dizziness, dry skin and fatigue. He first put her on .125 levothyroxine, which only barely raised her T4 with a low T3. She continued to have the above symptoms, but also complained of nervousness, palpitations and weakness. He then moved her over to two grains of Armour, one brand of natural desiccated thyroid (NDT). The disciplinary action states:

Lab test results dated November 2, 2010, indicated that THS [sic} levels were suppressed, suggesting that V.G. was receiving too much thyroid hormone. However, at V.G.’s subsequent office visit on November 30, 2010, Respondant made no change to V.G’s thyroid medication. (#15)

The patient also had high cholesterol, plus symptoms of PCOS–both clear symptoms of continued hypothyroidism even though they claim she was receiving too much thyroid hormone! By point #17, after the patient had been raised to 3 grains, it reports a slight lowering of cholesterol and normal triglycerides, yet it was stated once again that she was on too much thyroid hormones due to a suppressed TSH. The bombshell comes in #19, it which states:

Respondent was grossly negligent in the care and treatment of V.G when he failed to recognize abnormal thyroid function tests and failed to properly adjust thyroid medications.

In other words, the California Medical Board was claiming that this doctor should have LOWERED the medication due to a suppressed TSH, in spite of the fact that she continued to have clear hypothyroid problems on the lower dose of 2 grains. Scores of thyroid patients who’ve had their thyroid meds lowered due to a suppressed TSH will tell you that their hypothyroid symptoms got worse, not better.

(If symptoms improve from lowering desiccated thyroid due to a suppressed TSH, that is more about the relief of hyper-like symptoms caused by low iron or low cortisol–either which NDT will reveal and aggravate until treated. See www.stopthethyroidmadness.com/ndt-doesnt-work-for-me  Also, there is a possibility that V.G.’s low T3 was due to a high Reverse T3, which will occur in the presence of low cortisol, low iron and/or inflammation.)

As far as a suppressed TSH, informed thyroid patients worldwide, who when optimally treated on NDT with the complete removal of hypothyroid symptoms (plus a healthy blood pressure and heart rate), find that it’s quite normal to have a suppressed TSH without one hint of symptoms of being on “too much thyroid hormone”!!!

Medical Boards can be a problem for thyroid patients and good doctors alike!

In the United States, there is a Federation of State Medical Boards with the stated purpose of “protecting the public from the unprofessional, improper and incompetent practice of medicine…”, yet the very boards which state they are protecting us from professional incompetence end up supporting incompetence via their flagrant ignorance about the TSH lab test and their dubious “discipline” of doctors who end up changing our lives and well-being!!

Or in the United Kingdom, we have the General Medical Council with the stated purpose of helping ” protect patients and improve medical education and practice across the UK”….yet they completely hounded Dr. Gordon Skinner who successfully treated thyroid patients, even though their TSH results erroneously implied that not a thing was wrong. Additionally, the GMC has brought at least 30 cases against Dr. Sarah Myhill, who also had the courage to treat her patients in spite of a so-called normal TSH.

Dr. Myhill so wisely stated: “Doctors who fail to toe the drug-industry-driven, conventional-medicine, symptom-suppressing line are singled out for special attention by the establishment”

Are Medical Boards useless?

Most informed thyroid patients would clarify that Medical Boards have good intentions. They can play a role in protecting us from true incompetence or negligence from those we put our trust in. They can serve a role in protecting us from sexual misconduct and the inability to practice safely due to substance abuse.

But when it comes to the highest and best treatment of our thyroid disease, medical boards DO THYROID PATIENTS NO FAVOR by disciplining doctors who….

  • have the wisdom and courage to look at the clinical presentation of clear symptoms rather than simply a “pituitary hormone” lab test with both its ridiculous normal range and its FAILURE to measure whether all organs and tissue are receiving enough thyroid hormones…
  • pay more attention to symptom relief on natural desiccated thyroid  (with good heartrate and blood pressure) rather than obsessing about one’s suppressed TSH lab test when thyroid patients are optimal.

As Albert Einstein so wisely stated, the measure of intelligence is the ability to change. Will Medical Boards grow up and change in their knowledge of thyroid treatment? No one more than maltreated thyroid patients worldwide can fervently hope so, as well as forward-thinking doctors who have been wrongly harassed by their medical boards in their treatment of hypothyroidism.

JanieSignature SEIZE THE WISDOM

 

*For more detailed information on the history of Medical Boards and problems, check out the book titled Medical Licensing and Discipline in America: A History of the Federation of Medical Boards. 

* Join the STTM Facebook page for tips, information and inspiration. 

* Do you have both the STTM books? They are extremely useful in making you an informed thyroid patient based on the experiences and wisdom of patients before you worldwide!

 

 

 

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